In 2002 I got the earth shattering news that I could possibly have Multiple Sclerosis. In 2003 that news was confirmed. I was 29 years old. I wanted to start this blog to go over the last few years of dealing with this illness and look forward to the future as it happens. If I can give hope to just one person, that life isn't over when you get life changing news, then this will have been worthwhile!

MY BIRTHDAY!

Thursday, 8 May 2014

FAMPRIDINE (Fampyra) and getting it available for everyone!

FAMPRIDINE (Fampyra) - How many of you have heard this name and how many of you know what it is or what it does?

FAMPRIDINE (Fampyra)

I'd not heard of it until a very good friend of ours, who also has MS was telling me about it. It is the name of a drug that can be used to treat worsening mobility in people with MS. In fact it is the only known treatment that can improve someone's walking speed that has been affected by MS.

There are a lot of symptoms associated with MS but most people won't have all of them. There are some that are more common than others though, that a lot of people will experience, for example, muscle stiffness and spasms. Worsening mobility and balance are also quite common symptoms.

There are a couple of medications, Fampridine and Sativex, which are both known as SMT's or Symptom Management Treatments. These can help people to manage the aforementioned symptoms effectively which, ultimately, will allow people with MS to live fuller and more independent lives.

One of the issues with these medications though are that people's access to them are terribly low. The numbers suggest that as few as two percent of people with MS have access to these potentially life-changing treatments.

Fampridine was granted a conditional licence by the European Medicines Agency in July 2011, which basically means that Biogen Idec, who manufacture the drug, has to carry out further research about the benefits and the long term safety of the drug.

While it has this licence, it hasn't been approved by the National Institute for Health and Care Excellence (NICE) and so the NHS is under no obligation to provide it. NICE is currently reviewing the evidence for both Fampridine and Sativex.

Fampridine is considered a specialist treatment and as such NHS England (NHSE) is responsible for funding any prescriptions for it. NHSE’s current policy for Fampridinerecommends against prescribing it routinely, which has led to particularly low access.

The draft NICE guidelines were published last week and do not consider there is sufficient evidence to warrant these drugs being available on the NHS. In addition they do not feel they are cost-effective.This is a devastating blow for people affected by MS, and the MS Society is gathering evidence to challenge these recommendations.

Unfortunately time is very short - there remain only 5 weeks to formulate a reasoned challenge. Please consider making your MPs aware of the issues -you can contact them by going to the website 'Writetothem.com. If you or anyone you know has direct experience of these drugs - particularly anyone who is paying a private prescription, or whose consultant has suggested one or the other but where prescribing is pointless because of the problem paying, please contact campaigns@mssociety.org.ukas soon as possible.

What can you say to your local MP? Make them aware that access to a potentially life altering drug is only available if you can afford to pay for it. Surely if there's a treatment that can help and improve peoples walking and balance it will make them safer and therefore save money on trips to the doctors or hospital? Of course, those people who feel no benefit or who react badly to side effects would not continue taking it, thus minimising the overall cost.

There needs to be a fairer way to sort out what drugs are made available and for whom. It shouldn't be dependent on where you live or whether you can afford a treatment. If there is evidence to prove its effectiveness, it needs to be made available to everyone and on the NHS so that anyone who could possibly benefit from this drug can have their chance at a better life.

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About Me

I am 43 years old and I have been happily married to Martin since 1998! We have 2 cats who are our beautiful babies! Oh yes and I have Multiple Sclerosis. I was diagnosed in 2002. I stopped working in 2004 but got a part time job at Asda from 2006 - 2009.
One of my main passions was being involved in theatre, especially singing and I have continued that by organising 3 charity concerts with Martin. We have raised over £6000 so far. I also make my own cards, when the MS lets me!
Welcome to my world......nice to meet you and feel free to join in! :-) XxXxX